The conference was great. The atmosphere was very warm, causal and yet there was still lots of "meat"-(science and research). We were all exhausted by Sunday afternoon and i mean both the PWN and their "normal" support people( significant others, parents, spouses). There were a great many college age people there. I will be writing about stuff i learned in my journal over the next week or so. There was just so much to absorb it will take me a while to organize it in my head to write it out. Do check out the Stanford University site. They have recently revised it. I gave blood to participate in their studies. They have been getting people (mostly children and teens) into the study within a year after symptoms start. Having long suspected that narcolepsy was autoimmune, they couldn't identify what might be the trigger ...what causes the immune system to make the mistake. They hypothesized that whatever the trigger was...it was a "hit and run" kinda thing...were the evidence of the trigger was long gone by the time most people got diagnosed. They have found that a very significant number of people were exposed to strep in the year prior to symptom onset. Right now this is just a very interesting observation. Again I will be journaling more stuff from various workshops at the conference. The next conference will be in Arlington, VA next October. The one after that may be in Columbus, Ohio-my hometown-y'all can come camp out at my house! Please do check out the Narcolepsy Network website. Back to nap. xo p.s. beyond the science there was plenty of just plain old wonderful support and mutual understanding and laughter.
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